Mrs Quarmby, from Mossley, near Manchester will today lead a protest march of parents and children to Pendlebury Hospital, part of the Royal Manchester Children's Hospital. Their homemade placards and banners will proclaim their anger and frustration at the reluctance of the National Health Service to pay for what experts agree is the treatment of choice for all haemophiliacs, but which is particularly appropriate for children.
It is the latest development in an increasingly bitter battle that has united doctors and parents nationally. They are demanding that every health authority or trust pays for the genetically-engineered version of Factor VIII (recombinant Factor VIII), the clotting agent haemophiliacs depend on for their survival.
The recombinant version poses less risk of viral contamination than the human plasma-derived Factor VIII, which is about half the cost and accounts for more than 90 per cent of the clotting agents used by the NHS. Human blood products are normally exempt from VAT but a decision by Customs and Excise to impose 17.5 per cent VAT on the recombinant form has, according to Dr Paul Giangrande, director of the Oxford Haemophilia Centre, put it even further out of reach of the patients.
Following inquiries by The Independent last week, Dr Giangrande has been told that the Wiltshire Health Authority is now prepared to pay for recombinant Factor VIII for two young haemophiliac brothers. The Royal Free Hospital in London has announced that it will give all haemophiliac boys in its care the recombinant form and says it expects health authorities to "co-operate" in funding the treatment.
Pressure is growing for other health authorities and hospitals to follow suit and comply with the recommendation of the UK Haemophilia Centre Directors' Association, to be published next month. This document advises that the recombinant Factor VIII should be used for all haemophiliacs.
Out of 11 hospitals across the country contacted by The Independent, six provided only plasma-derived Factor VIII for the treatment of both child and adult haemophiliacs.
The other five hospitals gave recombinant Factor VIII for a limited number of children - those who have previously not received any clotting treatment. Children and adults who had already received plasma-derived factor VIII, were carrying on with the same treatment.
Haemophiliacs cost the NHS about pounds 40m to treat annually, and some doctors say the bill would double if recombinant Factor VIII was provided for all. Angela Raffle, a consultant in public health medicine for the Avon Health Authority, says a child with serious haemophilia receiving the plasma-derived Factor VIII throughout life, would cost the health service pounds 2m. The cost for giving a child the recombinant product would amount to pounds 5m.
"I know that theoretically recombinant is safer," said Dr Raffle said yesterday, "but we are talking about a theoretical improvement at the cost of doubling the Factor VIII budget, which we could not afford."
But leading haematologists dispute that the improvement is theoretical and say that the safety and purity of recombinant Factor VIII should outweigh any concern about the costs. The HIV tragedy - where 1,200 haemophiliacs were infected with the virus that is linked with Aids, through contaminated Factor VIII used in the early 1980s - casts a long shadow over sufferers, their families and the doctors who care for them.
More than half of those with HIV have died, and scores of others are living with Aids. It is now apparent that 60 per cent of the UK's 5,000 haemophiliacs have contracted hepatitis C, a virus that has been only recently discovered.
Although the risk of transmission of HIV and hepatitis C has been minimal since1986, when new viral deactivation procedures were introduced for blood products, hepatitis A virus and parvo-virus are resistant to all the present means of sterilisation.
Three young haemophiliac boys treated at the Royal Manchester Children's Hospital, contracted hepatitis A earlier this year. Although contaminated products have not been implicated in this case, the incident has heightened the fear of parents whose children arealso receiving care at the hospital. Janet Hartley from Horwich, near Bolton, who has three sons aged 13, 10, and 7, all with severe haemophilia, says her greatest fear is that some new virus, which has yet to be discovered, may be present in the plasma-derived Factor VIII.
"I have to inject each of my sons with Factor VIII three times a week to prevent their bleeding," she said, "It is hard to do that when you don't have full confidence in what you are putting into their veins and when you know there is a purer product that could be used." She will join the protest today.
The parents know that today's protest will have the support of Dr Richard Stevens, the director of the Haemophilia Centre at the Royal Manchester Children's Hospital. Dr Stevens says that the recombinant form of Factor VIII has the potential for being safer, and that he wishes he could prescribe for all his patients. "Treating children with the plasma-derived product causes a lot of anxiety... they have my support. The trust supports the clinicians and their aspirations. The problem is getting money out of health authorities."
The Haemophilia Society, which has campaigned vigorously for recombinant Factor VIII, has appealed to the Department of Health for central funding, but the request has been rejected. A spokesman for the department said the decision lay with local purchasers and providers, and that any decision must take into consideration how it will affect other patients and the rationing of other treatments. He pointed out that recombinant Factor VIII was not without some risk as it included a human-derived protein, albumin, as a stabiliser.
More than half of Factor VIII used in Germany is recombinant, and a similar level of use is reported in France although that form is more expensive than the British product.Reuse content